I found this doctor, Dr. W., back east on the National Gaucher Foundation website. I had emailed him some questions back when we were first looking at Gaucher’s, and he emailed me back with a lot of details and information. So much so, that even my pediatrician (who I forward everything to) was impressed and glad I made the connection. Dr. W. had sent me an unsolicited email back in mid November asking how Hannah was. I was so touched.
I sent him an email tonight sharing Hannah’s diagnosis and asking him a few questions. Within 90 minutes or so, he emailed me back with the information I asked for AND he told me to go meet with a colleague of his up in Dallas who is one of the leading experts in Gaucher’s Type 3. Not only that, he contacted this doctor to let him know I was going to email him!
I did email Dr. S. asking him if he is accepting new patients, and if we could set up a consultation with him via phone, email, or in person. I just received an email back telling me “absolutely!” He gave me his clinic number and told me to call tomorrow to set up an appointment time. I need to get a copy of Hannah’s records (probably a book!) to bring with us.
He’s not covered by our insurance, but I think he will be worth it. I mean, I KNOW he will be worth it. I’m going to call the insurance company tomorrow to see if maybe he just isn’t on the list, but I’m not holding my breath.
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